Gavin Mogan
@purposeful_pd
Followers
2,446
Following
578
Media
1,041
Statuses
8,067
Personal Trainer to Parkinson’s warriors - move to your groove. Lawn-care for the soul - mow with the flow. Ball.
Dallas, TX
Joined April 2016
Don't wanna be here?
Send us removal request.
Explore trending content on Musk Viewer
chan
• 193611 Tweets
FELIX
• 152960 Tweets
アザラシ幼稚園
• 126362 Tweets
Emily
• 79633 Tweets
#Lollapalooza
• 72466 Tweets
#SKZpalooza
• 68305 Tweets
#SmackDown
• 62246 Tweets
STRAY KIDS DOMINATE LOLLA
• 52287 Tweets
Angola
• 44243 Tweets
残高不足
• 40407 Tweets
ロッキン
• 34892 Tweets
FGOフェス
• 34651 Tweets
Lamar
• 28273 Tweets
Aerosmith
• 27047 Tweets
ムビチケ
• 22972 Tweets
#LYKNConcert
• 22576 Tweets
Ram Rahim
• 20011 Tweets
Mahomes
• 19302 Tweets
Bloodline
• 18806 Tweets
Blake Snell
• 17271 Tweets
Key to Moral Values
• 17003 Tweets
バス会社
• 16375 Tweets
オベロン
• 15562 Tweets
英霊博装
• 14774 Tweets
はちみつの日
• 13445 Tweets
淀川花火大会
• 10733 Tweets
Tyreek
• 10313 Tweets
@MichaelOkun
@basbloem
Oh… My…God… this is a striking ignorance of basic Parkinson’s. The rotating pedals??? Freezing is a fear of falling. We can’t fall if we’re not on our feet. It’s not that we can’t walk. It’s being blocked. I’m sorry but this is unacceptable. I’ve made hundreds of videos on it.
14
44
320
Yesterday we discovered my wife has a brain tumor. We have two kids at home. I was diagnosed with Parkinson’s 14 yrs ago. I share this in hopes it helps someone. How can it be that I have never seen her so at peace? Us both, really. Everything clearer now, not darker. Instantly.
37
3
144
Just wanted to thank everyone for the wonderful support after the passing of my wife, Amy, due to brain cancer complications. Haven’t been able to respond to everyone yet. But I have or will catch up on your posts in due time. Need more time with family right now.❤️
27
1
94
The tragedy is not so much that we die with/from Parkinson’s, but that it takes our soul first.
Death doesn’t bother me. Not living does.
8
7
88
I don’t have any advanced neuroscience degrees. I just live with Parkinson’s. I study it, feel it, explore it. But I mostly just live, fully.
2
5
86
To counter Parkinson’s/freezing of gait, I’ve demonstrated the power of hugs, sport, music, giving, surprise, etc. I now add the power of the butt. It’s like a reset butt- on! Ready, sit, go!
8
12
76
Parkinson’s is a most ruthless landlord, locking us out despite getting the rent. But it feels so sweet to pick the lock… Here rhythm and cues are the master. The slumlord will strike again. I can’t always dance, but I can always sing.
3
3
68
Crossing the divide between having to use a walker and getting to use a walker… sometimes Parkinson’s takes things from us we’re better off w/o anyway (ego). I did the math. It was 60% faster, + safer, comfortable…To date, I’ve limited myself more than any disease has.
11
4
65
To all newly Dx w/ Parkinson’s, don’t be afraid of looking different, being different, thinking different or moving different. See them as assets. Nobody else can define you, limit you or judge you. Commit heart, mind, and soul. Lastly, enjoy the ride!
12
5
63
(1/2) What is Parkinson’s disease? What is a Functional Neurological Disorder (FND)? How many neurological labels have a basis in the same neural responses? I’ve performed this to even a greater degree in two movement disorder, offices and there was no curiosity/belief….🧵
11
6
59
Amy had 330 days between her first brain scan and her last breath. We did everything we could. Those 11 months took a lot, but gave me even more. I have no choice but to get stronger. Amy willed us her spirit. And I will never me the same as I was!
9
1
58
I’ve never had a wider range of emotions in my life than now. So I’ll use that. My goal is to help raise $1 million for Parkinson’s in Africa in Amy’s honor, and help/love her beloved elephants at the same time. Then our family will go meet them all! With Amy, anything’s possible
11
8
58
1/4 The children and I must begin a new chapter of life today. I have some experience in such things with Sparkinson. If only I could take away their pain. They were already accustomed to Dad’s reduced family role. Mom somewhat made up for it. But this one is a tough blow. 🧵
6
1
57
For anyone wondering how they’re going to manage with Parkinson’s:
I lost a job I liked. Gained ones I loved.
I lost friends. Gained better ones.
I lost myself. Discovered a better one.
I lost financial security. Gained peace of mind.
I lost time. I treasure time I have.
4
5
50
Always wanted to add cancer patients to my training. Wouldn’t have wanted it to be my wife though. But I’ve missed it and she needs it. Turns out, this kind of training does wonders for anyone.
15
7
50
I need not fear the grocery store because of Parkinson’s. I have a whole toolbox of moves. The grocery store probably fears me though…
3
4
48
To newly Dx. I’m sorry you have Parkinson’s. But you should know it’s up to you what you do with the rest of your life, nobody else. You may not control whether happy or sad, but you can control which you want to be - that will go a long way. Won’t be easy. But could be better.
3
3
48
One day I’ll die, likely due to complications from Parkinson’s disease. Till then, I’ll live every day, perhaps even clowning the disease. When you get me, PD, you get me meticulously emptied.
8
4
46
I could’ve never pictured my life like this at 54. Been through and going through a lot. Only gets harder, too. But you know what? I also didn’t know what I have in me. I have great relationships, tons to be grateful for, and a much healthier view of life.
6
1
46
Parkinson’s gets worse and worse over time. But if I become less and less bothered by it, am I getting worse or am I getting better? My answer is that’s a useless comparison. My sole focus is to be better, 100% under my control.
1
2
44
13 years of Parkinson’s behind the curtain is some ugly s***. But to me it’s a beautiful reminder of what I have. Testimony to potential we all have for something. There’s always hope. If there’s breath in our lungs we can decide how we’ll use it.
4
8
43
This was a major victory over deep off-state Parkinson’s. I post these to encourage your own dancing, letting go, and self-discovery. But I usually fail in my attempt to become free. Much of my day is “fail”. I just don’t see it that way. I’m living.
5
2
40
Hey, Parkinson’s Research, u there? Likely futile, as u really don’t listen to us, do u? The problem isn’t we don’t know exercise is beneficial. Its that we don’t properly engage. Solve that and we’ll celebrate everything about u. Or remain bubbled for more fake peer applause.
10
4
40
We may all have Parkinson’s, but we are all N/1. Our docs/science understandably see us as a collection of symptoms/a stat in a study to stoke status. But we’re individuals guided by the invisible. We can transcend - something! Better is everywhere. We should embrace not resist.
4
3
42
Twitter been fun, but the time has come. Life so precious no more seconds to spare. We won’t worry for each other. I know we’ll all be fine. Flowing through life one moment at a time. ❤️
19
0
40
This shit is hard.
Hard compared to what?
The easy life I had.
But compared to how hard it will get?
This shit is easy.
No looking back.
No looking ahead either.
Living here.
3
2
41
Ending Parkinson’s is a noble but very long-term goal if achievable at all. That’s the science, not me. But Ending Parkinson’s Suffering? If attacked, it could be significantly reduced in 12 months - globally. We have the knowledge. The resources. Do we have the heart/will? Yes?
4
2
41
I may get suspended for this video, copyright violation I presume. If you take this message to ❤️, it’s worth it.
No matter your condition if any, 🕺and 🎶 every day. Why? You’ll know after a few times. And 🤗 and ▶️ and 😂 and ❤️. Power to choose.
14
3
41
I know it’s not the intention to build great careers on the backs of the Parkinson’s world. And I truly appreciate work done on our behalf.
But more of us and less speaking for us please. We are partners in this. We are equally expert. And nobody’s paying us shit.
3
3
40
Wife has brain cancer. She’s been feeling bad lately. Stuck at home, often bed. We were dreading Dr. appt. yesterday. And she dominated the whole day out! Completely different person. Inexplicable. Do the things you fear. Engage with life. Change your environment. Stay hopeful!
4
0
40
Amy, on this day we lay your ashes to rest, I send you off with something magical and fun, like you. Your love and inspiration will live forever. ❤️
13
3
40
Is there any drug more transformative than levodopa? Average person couldn’t possibly understand. Still grateful every day. I’m constantly only a few hours, at most, from relating to almost anybody.
My testament to the life it still brings and the love I still feel…
5
1
39
Here’s a story about faith, if you subscribe to such things. Otherwise, it’s about belief. Sometimes that’s all we have. Sometimes it’s all we need.
11
4
40
I was supposed to be using a cane 10 yrs ago, per neurologist. I use a cane now 5% of time. Dr didn’t know me. Just his best estimate. He didn’t realize he lit my fuse. Don’t let anyone else dictate your future. Somebody else would be raising my kids now if I accepted norms.
5
0
38
Despite all the lousiness of Parkinson’s, it has allowed me to be something completely different - myself.
Nice to finally meet you. What should we do?
Everything.
7
2
39
What if the way to beat Parkinson’s is to not only accept it, but to embrace it? It’s the only life I’m given. Does that alter it? Alter everything? What happens when I decide war is over and living is restored? On my terms. Love flows, fear implodes. Thanks for the love, Paul.
8
1
39
My 14yo doesn’t have her mom’s sweet smile or resonating spirit anymore before heading off to an imposing high school. She has me - often looking like an injured lamb in the morning. But I assure her that in us both is the heart of a lion.
6
1
39
There seems to be an advocacy agenda handed to us quite frequently. I appreciate efforts on our behalf. But there is a distinct lack of inquiry into what the PD population wants and needs to improve our quality of life. Please ask us more, tell us less!
3
6
39
How we characterize living with Parkinson’s matters. It matters to hundreds of thousands who will be diagnosed this yr alone. What we tell them, likely what we were told, will shape their experience too. And their family and friends. I much prefer hope.
3
6
38
The great movie Awakenings features numerous ways patients came back to life. For me, a ball is live-giving. It moves. I chase. No thought or plan required! They say automatic movement suffers with Parkinson’s. But even more automatic movement can revive it. That’s so PD.
5
2
39
Last year was the hardest year of my life. They should become progressively harder.
But better… I don’t have a year, a month, a day. I have right now. Nothing compares.
2
1
38
My children will have no inheritance. They’ve had less father, and more struggles, than deserved. Their childhood experience was different than their friends.
But they’ll intimately know effort, love, faith, creativity, adaptability, compassion, and justice. I’m cool w/ that.
8
2
37
Over 200 yrs we’ve been studying Parkinson’s and this is where we are. No basic understanding of our movement problems. It might be excusable if no one had told them. But we have. We’ve shown them. Again and again, and again… there’s no serious inquiry. Only papers and journals.
A person with Parkinson's disease can't walk because of severe freezing but put him on a bike and he is fine. Great case by Snijders and
@basbloem
Love the explanation: 'This striking kinesia paradoxica may be explained by the bicycle's rotating pedals, which may act as an
106
1K
6K
7
6
36
I’m loving the thought of publishing my own research journal. No jargon, no multi-million $ grants, no paywalls. This entry compares numerous Parkinson’s cancellation techniques amid sweet background vibes. This journal’s aim is to test what no expert can imagine.
4
2
36
Parkinson’s experts will continually sell us their books, research, and observations. But when transformative results are obtained within the patient community itself, there’s no backing whatsoever (
@ajlees
very notable exception).
#dopaminedance
PD symptoms 10y, very sick 5y ago, now 90% better, 80% less meds. Very grateful and happy.
1
2
8
7
4
35
I had a 3 y/o and another due in 6 mos. Hard to describe the internal fire ignited when Parkinsons showed up. Wife’s health now adds further fuel.
I’m doing my best to become my best. We all have our own journeys. We’re all doing our best. Our best is always enough.
5
0
35
If you have recently begun experiencing freezing of gait, you might be able to tame the beast by not allowing it to creep in. Worthy practice, perhaps at any stage. Never know when…
8
0
36
It’s after midnight, Saturday night. Probably should be in bed. But I’m not. I have too many questions. Too much possibility. What’s going on here? How can we go further? What is this disease? It’s OK, I’ll bill for my overtime. 😆😆😆
5
3
36
I’m still raising two children under a cloud, by myself, with a declining body. Every moment is important. Why wouldn’t I use everything possible? Seek and exude the good… it’s invaluable! Parkinson’s with and without gratitude/music…
6
3
36
Living 15 yrs with a particularly vexing, chronic illness has been an ongoing challenge. But it’s also given me the opportunity to now effectively care for my wife. We get valuable, precious time together, never closer.
3
1
35
This is what I mean when I genuinely say that I don’t have Parkinson’s, I have Sparkinson. The beast is the same but my perception of it isn’t. I challenge/use the beast as much as it challenges/uses me. Yesterday…
1
4
35
I can’t work, play, eat, sleep, speak, spend, etc. like most of the world. I’m forced to think, feel, and act differently. If I survive all that, I stand a pretty good chance at a content, meaningful, and impactful life.
3
6
33
It’s all very fragile right now. If anger, apathy or depression were to settle in, my family would pay a significant cost. I’ll do anything/everything required. Some may see this as pressure. I don’t. My very best is all I can give.
5
0
33
Woke up grateful for the little movement I had, the means to a pill to restore me, the ability to sit up and swallow, the water to flush it, the time to allow the miracle, and the bedside Styrofoam cup I could piss in. Grateful for little things, big things, everything!
5
0
34
Whether an oh-shit moment or physiological response to a ball that mustn’t escape, the spark that overcomes Parkinson’s is a mysterious, exhilarating force. You see it here when at play. But the spark can be evoked anywhere for anything. Where PD gives an inch take miles.
5
1
33
@SalsbergMathews
@PdAvengers
@RichelleFlan
@ParkinsonsEU
@womenspdproject
@ParkinsonCanada
@ParkinsonDotOrg
Sparkinson actually started me dancing. Parkinson’s locks up my body and mind. Sparkinson is helping me unhitch hang-ups. Here’s a morning groove and an evening one.
6
4
33
There’s so much more behind the 100 seconds here. Always is. Pain, failure, frustration… but also empowerment, enrapture, revelation. Too easily I forget - when I stop trying for outcome & I escape the prison of self, a more beautiful, encompassing reality awaits. Trash day…
2
2
34
1.
@movedisorder
#MDSCongress
We agonize over what turns Parkinson’s on to the tune of billions of $. Have we sufficiently considered what turns it off? I have and I flip it regularly. Not to any degree approaching a cure, but I can isolate it, grow it, and manipulate it. 🧵
2
4
31
4/4 Amy is either looking out for us or has already instilled w/in us all we need to persist and live well. Despite loss and adversity, we’ve been blessed many times over. We’ve actually been given more than we need for fulfillment. One day at a time…the only way forward.
4
0
33
When diag. w/ Parkinson’s, especially while still parenting, the neurologist really should tell you it’s going to get quite challenging. But also that you’ll become like a superhero. No cape required, But unrecognizable strength. Lay that groundwork early. Props YOPDers. 💪🏼🤪🙌
5
2
32
Neuroscience, at least as it relates to Parkinson’s, you’re just as frozen as we are. You try to solve problems as you see, not as we do. You see us, observe us, and quantify us, but you fail to understand us.
3
2
33
When life gives your marriage Parkinson’s and brain cancer: the good, the bad, and the funny. Because this shit-show is too surreal not to document…
6
0
33
I got Parkinson’s. I used it to reach people. Broke my hand. Shot basketball left-handed to raise $ for Africa. Amy passed away. We’ll use that to yield international Parkinson’s focus? Damn sure try. Anything’s possible.
@realmikefox
@MichaelJFoxOrg
2
3
30
Please understand that those with Parkinson’s on platforms like this feel obligated to speak for the silent majority. Few of us have the luxury to connect with leading doctors and researchers. If we’re not prodding on behalf of the world’s silently suffering, what good are we?
2
0
31
142 hours later, my kids have their mother home. Endless gratitude for the invaluable support. Returning physically weaker, spiritually stronger. 14 yrs Parkinson’s has been exquisite training for the grueling, yet unforgettable quest ahead. Any/all welcome to tag along!
4
0
31
I could theoretically become the fittest, most knowledgeable, best-slept person with Parkinson’s on the planet. And I’ve likely not made a single person any happier, myself included. But I can smile at a stranger in passing and make us both feel slightly better.
6
4
32
Some Parkinson’s theory. Good input from others. This seems to make sense. PD Family, I think together we can figure things out. There’s like 8 million Parkinson’s experiences! I don’t see any insight like this given to us. Nor do they seem to want it from us.
7
1
31
We get all kinds of good advice to help treat Parkinson’s. Very grateful for it. One thing never discussed? Managing near crippling and constant fear. It’s built-in to the condition but can be significantly reduced. We can feel alive again w/o so much irrational fear.
4
0
31
Parkinson’s, u strange M***** F*****😁
The personal scientist may travel, but never takes a day off.
1
1
32
I resisted for too long, but dancing may be the ultimate therapy. But this one is for Amy. 20 years tomorrow. We’ll spend anniversary at MD Anderson. Life is a crapshoot. Dance and sing and laugh and hug your way right through the whole damn thing!
This was the effect the dancing queen described to me in 1975 but she was stomping and spinning not doing the cha cha cha
@YogawriterDavid
@RichardSearling
@IanLevine
| TEDxIDC via
@YouTube
0
0
2
8
0
32
We’ve long known that low motivation is a built-in component of Parkinson’s. Easy to foresee one of healthcare’s future regrets will be lack of measures to stimulate patient self-care. It’s as vital as prescribing meds and evaluating symptoms. We must motivate them to motivate us
7
6
32
Just a friendly reminder to get a little dancing in today - or a lot. But not in obligation. In spontaneity to feeling music.
3
1
32
Legit hope.
9
4
31
A comparison of losses/gains over 15 yrs of Parkinson’s. L: Sleep, comfort, career, income, savings, relationships, family unity, self-respect, voice, food, attention, direction, security, freedom of movement, smell/taste, energy, mental clarity… G: Perspective. Advantage: Me.
2
3
30
1/3 Mind/body connection. Real deal. I don’t always notice Amy is gone because I stay busy. But my subconscious knows. There’s an energy missing in the house. One that impacts everything physical. I miss the hugs, too. I’m not sad. Just realize how good I had it for so long…🧵
5
0
30
We always think the answer lies in something external. Oh, this thing will slow Parkinson’s. Let’s research it. No! No, no! If anything can slow Parkinson’s, it is you! It’s what you put into that thing, beliefs, attitude, etc. Study you. You’re the answer!!!
4
0
31
When I think of gifts of Parkinson’s/life, I think of using whatever is bestowed upon me. Do I like them all? Hell no. But can I flip them? Playing 4 hrs of bball daily in the gym hosting Amy’s memorial. All efforts to a forgotten continent of 1.5 bil. Laugh love live.
6
1
29
Despite being the worst year of my life, I was the recipient of so many acts of kindness. Here’s a massive one. Nirav, an 18yo stranger, gifted me two hours of his time, effort and spirit in my quest to raise money for Parkinson’s in Africa. Look at Nirav’s genuine encouragement!
4
2
31
Uplifting somebody, that’s what being human is about… All we do is play it safe…All we do is live inside a cage. We’re gonna breakthrough Parkinson’s one day - for our children.
4
3
31
I was massively gifted by a stranger this morning. A sharp reminder of the person I aim to be - one fulfilled by pouring into others. I’d say we both saw things we’ve never seen before! 🏀
13
2
31
Eternal gratitude to those guiding me from: Parkinson’s sucks, why won’t somebody take this away? To: Disability isn’t to be feared, ashamed or defeating, how can I help take away this perspective? Parkinson’s takes, but it gives me will, perspective and self-awareness.
3
4
29
I greatly admire and amazed by Parkinson’s movement adaptations. Constantly engaged in this obsession. Perhaps even addicted to ability to stay present when challenging balance/mobility. Was prepared to deep dive this but easier to offer a chuckle. I ❤️ it all. We’re a trip. 😆
4
4
30
Here’s ol’ Gavin at the cemetery again. What’s he doing? I’m exploring Parkinson’s from every angle. I’m making debilitating Parkinson’s nonexistent for several minutes. No music, no people, just feelings. I think we’re unlimited, like Africa.
@realmikefox
@MichaelJFoxOrg
4
5
29
I thought it was strange when a person I fully trust urged me to dance more. Like many, I resisted. But now I get it. So I’m asking you to trust me. Do you want a better life? Don’t be close-minded like I was. I was the problem.
3
2
30
Masterfully written piece capturing the essence of Amy and how her life impacted so many. Dallas Morning News, September 17, 2023.
11
2
29
How many research studies designed to enhance quality of life or treat Parkinson’s are published annually? At how many $100s of millions? Has your daily life changed as a result in last five yrs? Is this ever a metric? Isn’t this a primary task for PD orgs? We can do better.
7
5
29
Curveballs. 5 yrs into marriage I was diagnosed with a degenerative neuro condition. Year 20, full-time care necessary - for my spouse, Never occurred to me that I would play both roles.
Sucks but no time to sulk. Life has a 5-pitch repertoire, at least!
11
0
29
What if you got Parkinson’s but gained self-awareness? Got PD but lost fear of rejection? Decline physically but discovered how to adapt, grow, evolve? Lost relationships but made stronger ones? Lost the future you believed was your right and gained only moments felt to be gifts?
3
2
28
Now in yr 15, I guess I’m one of the old guys in Parkinson’s Twitterville. But there are more experienced, some much more so. What I generally see in them, and am learning myself, is an ability to shift perspective, a recognition that they control their response to challenge.
🧵
3
2
27
What’s the reward for working harder than I’ve ever worked as caregiver for my wife? Parkinson’s better? Nope, still feels like shit.
My reward is that I get to do it all again tomorrow. Oh, and sometimes compensation is a bit more tangible…
5
1
28
Parkinson’s disease limits me in far fewer things than it does not. Pre-PD, I had a much more limiting view of possibility.
1
0
28
I went from almost dead to fully alive today, like I do every day, multiple times/day. How many in the world have this opportunity? How many have ever had it? Hard to live this way? No question. But this spectrum of life…I’ve yet to comprehend its…power? insight?
1
5
27
1/3 I highly encourage starting the day off with a nice hug if you can get/give it…
4
0
28
Parkinson’s trapped my body but ultimately freed my mind.
Good deal? Doesn’t matter. Done deal. But I’m negotiating for more every day!
4
0
27
@GuruAnaerobic
@MichaelOkun
@basbloem
Thank you. I think this video is similar. I’ll have to break it up in two pieces.
2
1
27
The perspective of Parkinson’s has opened my eyes to everything. I never would’ve thought getting less than 24 hrs/day was OK. Some days now I get 12 “good” hrs. Counting. comparing, clocks and calendars are all just constructs. The only hour I’ll ever have is this one.
0
1
28
I can see a day when Parkinson’s no longer bothers me. When that day comes I’m cured.
It may take a decade, maybe a month, maybe tomorrow. Not sure when but I’ll get there.
4
1
28
Before Parkinson’s I had about 2 dozen family members. After PD I have between 6 and 10 million siblings.
But I’m also cousin of the disabled, marginalized, mood challenged... I’ve no preference as to who’s cured 1st only done most efficiently. Thus, more family is assisted.
1
3
28